After our kids received their heart transplants and they were stable enough to return to our home in Eastern Oregon we first had deep and lengthy conversations with our children’s heart doctors, social workers, and other care givers. We asked how we should act, where we should move, and what our kids can do with a life time of immunosuppressant drugs and a transplanted heart. At first we thought we would need to ‘constantly’ sanitize our kids and keep them sheltered from the outside elements. We saw a world of protecting and harboring them from infection and sickness. To protect them at all costs, we thought our kids would (or should) wear a mask to school or be home schooled. However, with the advice and council of trusted local and Stanford medical professionals, we made a very conscious decision to let our kids live their lives.
We have a responsibility to protect our children, but we also want them to
experience their childhood. We wanted
them to participate in school, play sports, go on wilderness backpacking trips,
attend church missions, and experience new places. With their immuno suppressed systems, we
could limit what they do and where they go, but we still want them to
experience life. These kids are only ‘kids’
for a few short years. Stacy and I made
that decision, and continue to hold to it.
This is how Stacy and I feel about this whole government shut
down thing. It’s impossible for the government
to totally protect us. Our kids need to
be able to experience there childhood and these once in a life time
opportunities. Yes there is a risk, life
is a risk, but it should be something we as individuals make a conscious decision
on. The fact that the Government ‘forces’
us and makes ‘our’ decisions is wrong.
Just like Stacy and I made a conscious and educated decision regarding
the health and activity of our heart transplant children, we as parents and a
society can make our own conscious and educated decision regarding our health.
If we feel we are at
risk, or that our children are at risk, then we can make the necessary steps to
protect us and them. We can mask up,
keep them home from school, church and other activities, and take other steps
as we fill necessary. If we are at risk,
then we need to protect ourselves. But
WE should be able to make that decision, NOT the government. We know the risks just like Stacy and I know
the risks of our transplant kids. We made the decision that we want our
children to experience life. We want
them to experience school, friends, dances, sports, church, missions, summer camps, all-star
games (Roper), college life, weddings, and other once in a life time
activities. The risk of Corona or other
diseases will always be there AND we accept that risk and consequences. We know what it takes to protect ourselves, and we should be able to make that decision ourselves. If our kids get sick, we acknowledge and accept
the responsibility, but that is our decision.
This country was
founded on the principles of freedom; freedom to act and live, and ultimately
accept responsibility for those actions.
We hope our government, schools, churches, sports organizations, and
other activities open back up. Allow
our children to live, experience and learn!
Limiting the kids is not right! We know the risks, we accept them, so let us
move on!
Having said that......, here's a brief update on the crew.....
Well its been over 7 months since an update. So much has changed in our lives as has yours I am sure. In all this craziness, I am happy to report our kids are doing great! They have all had checkups in the last couple of months and they are sitting with ZERO rejection and great heart function.
Lindsey Lou’s heart is also doing great. She has biopsies only ONCE a year. She is home, working at a pizza joint, and looking forward to school, friends and volleyball.
Having said that......, here's a brief update on the crew.....
Well its been over 7 months since an update. So much has changed in our lives as has yours I am sure. In all this craziness, I am happy to report our kids are doing great! They have all had checkups in the last couple of months and they are sitting with ZERO rejection and great heart function.
Sierra served a mission for the church until Corona hit. Unfortunately, she was released after only five and a half months. She had originally signed up for 18 months of service. She is now home, taking online classes from BYU-I and dating this critter named Mason (stand by for that one).
Lindsey Lou’s heart is also doing great. She has biopsies only ONCE a year. She is home, working at a pizza joint, and looking forward to school, friends and volleyball.
Gage Aurelius is also doing awesome and looking forward to returning to school as a 6th grader and playing whatever sports he can.
Megan is in Logan somewhere going to USU and working 2 jobs. Hunter is growing like a bull thistle and is looking forward to his freshman year, football (maybe?) basketball, a 30 mile hike next weeks, and seeing his friends.
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14 comments:
As a Sudden Cardiac Arrest Survivor and Stanford patient, with the double whamy of a bad heart and age, I am so grateful for what you said. We all need to continue to experience life and be in control of our own health. My heart aches for the kids. Everything once again is closed to the governement, including all schools at every grade level1! Glad to hear they are all doing well!!!
Judy Mims
I'm sorry, but while you may have the right to raise your kids as you want, and protect them (or not) as you choose - you do not have the right to cause pain and harm to others. The US is currently the number one country for Covid-19 cases and deaths. Your hospitals are being *overwhelmed* which causes more people to die because they cannot get the care they need. Hospital staff are getting sick, causing more work for their coworkers. People who have *survived* are saying that they wouldn't wish this on anyone because they're still experiencing issues caused by this illness. It's never been about whether or not people get sick, it's about *when* they get sick. If everyone gets sick at once, more people die because there aren't enough resources. Even if you get sick with a mild case - and there are ICU cases in just about every age range, so don't count on it - there is still the chance that you infected people who may need those resources - and can't access them.
I'm not saying that the US government (or state governments) are doing the best job. They aren't. Period. They should've done more months ago when other countries warned you this would happen. However, they are trying to protect you, trying to protect their citizens - which is what they are supposed to do! They may not be doing the best job (or, in some cases, actively causing harm), but some of them are trying - and you're concerned your kids won't get their full childhood? I get that you're not concerned with whether or not they die (I'm sure you've faced that decision way more often than other parents would), but keep in mind that they could carry the disease to you, to other family members, or to other families, and *their* loved ones may die. A major problem I see in the US is the level of absolute selfishness people display - and I know you'll say it's not about you, it's about all kids! And sure - life sucks for them right now, but it sucks for all of us, and God would want us to *take care* of each other, even if that means following the government's orders and wearing a damn mask or foregoing little league.
You're not bad people - I've been reading your blog for years now, and while I may not agree with you on everything, I genuinely like you, but I had to say something, because it's not the government's fault that they have to start enforcing protections - it's the people who *refuse* to care about others, it's their fault. And if you continue down this line of thinking, it will be yours as well. There are some things you should fight the government on - basic attempts to protect the larger population shouldn't be one of them.
It's not about being afraid, it's about doing what's right. It's about the individual doing what is best for the collective. To. Save. Lives. You have a valid opinion - losing out on a proper childhood sucks, and your kids have had to suffer through that more than most - but what really matters is that you do the right thing - and not just when you or your family are going to be affected.
I agree with that the other person who commented, its about doing what science suggests. No issues with letting kids play but masks protect others and so doing just that simple step could help decrease COVID cases. Sadly we have known whole families that have gotten COVID, have had church members die, and 20 and 30 year olds that 2 months after getting this are still not ok... I don't fear for my kids but I do fear for others. Our kids are playing with other kids in which their families have been following safety measures, quite frankly it's not that hard to play it safe. You would also be very hard pressed to find a doctor that would suggest not wearing a mask, its basically a prescription to life right now! As for following the government, well it's a mess. I am following science and doctors.
We love you guys, but think these circumstances are different. Other people's behavior directly affects the whole population and some of them just might not want to die. Unless you are letting your kids play inside a bubble of folks who are OK with dying, then go right ahead. Speak with healthcare workers in areas where this disease is thick, they are overwhelmed with people many of which many they just can't care for properly. Talk to nursing home workers that have seen folks die left and right.
We know a 20 year old who is still seeing signs of prolonged tiredness long after testing negative for the virus "recovered". What if a good percentage of people who get this disease and live end up with mono-like symptoms the rest of their life? We just don't know enough about this disease yet and shouldn't risk our kids "lives" for others actual lives. Pioneer kids seemed to do just fine without full social calendars! Take good care.
An area of these conversations that hasn’t been covered is the elderly. As an elderly person and Grandmother with an underlying condition, our lives are at twice the risk of contracting COVID-19. Most elderly people have some kind of underlying condition. If we are unfortunate and get the virus, it is most likely a death sentence for us. When I wear my mask, I am not protecting myself, I am protecting you. What if I am asymptomatic and don’t know it, if I don’t wear a mask I am exposing everyone I come in contact with. I wear a mask whenever we are with anyone other than the two of us, The only way to know if you have COVID and are asymptomatic is to have a test. I respect you when I wear a mask, all I’m asking you is to respect me.
I really like you guys and think you're great parents and agree that you shouldn't limit your kids and let them live after their transplants. However covid is different. You arent just risking your own life when you go out, you're risking the lives of others and that's different. The government is trying to save lives. I agree they havent done the best job but all the mandates are just trying to help us all survive! This virus is real. Im a 39 year old healthy woman and I got it in March. 4 months later, I'm still not better. I have possibly permanent lung and heart damage. I'm willing to make my kids "lose" a year of their childhood if it means preventing what happened to me, or worse, from happening to others. We have to think about others, not just ourselves.
Thank you for this post! I have been wondering how y'all have been dealing with everything. I agree that at some point, wet have to live life. We can't stay shut down. Humans were created to be social beings, and suicide is increasing. Masks may work, and social distancing can lessen the chance of things spreading. So I can see continuing some of the distancing and wearing masks if you can't distance. But we can't keep people locked up inside forever. There is a risk driving a car, but people do it every day. And there is a risk from COVID-19, and we each need to decide for ourselves how and when to mitigate those risks.
I am a fellow parent of a child with a heart transplant. She is nine years old and under normal circumstances, we try and let her live life to the fullest, while trying not be too overprotective. However, there is now a raging pandemic and unfortunately transplant patents are very high risk. Now is the time to be protective! She will be doing online school, we wear masks when out, and have had to limit or interactions with people outside of our immediate family. It is really hard at times, but keeping her safe from a deadly virus is most definitely worth it!
I WILL NO LONGER FOLLOW YOUR BLOG AFTER DOING SO FOR SEVERAL YEARS. I FEEL YOU ARE BEING VERY UNREASONABLE. IT SEEMS YOU WERE MORE THEN HAPPY TO TAKE ALL THE SUPPORT YOU COULD GET FOR YOUR OWN KIDS BUT WHEN IT COMES TO EVERYONE ELSE AND THEIR KIDS IT'S A DIFFERENT STORY. HOW CAN YOU E POSITIVE ONE OF YOUR KIDS MIGHT NOT BECOME A CARRIER AND PASS IT ON TO ANOTHER CHILD WHO MAY PASS IT ON TO THEIR FAMILY. YOU PEOPLE TOOK THE HEARTS OF 3 OTHER CHILDREN AND GAVE YOUR OWN CHANGES AT LIFE BUT WHAT ARE YOU NOW SAYING THE HELL WITH EVERYONE ELSE'S KIDS? -SHAME ON YOU OTH YOU ARE TOTALLY SELFISH!!
Whoa now, let's not be hurtful and mean about what someone else decides to do, Mr./Mrs. Anon. In defense, they are consulting with medical experts from Stanford. I too feel the same way they do about letting my kids and myself live life. We aren't in an at risk category, but still have to weigh ALL the evidence and information (and misinformation) about Covid the best we can. There is a lot we don't know about this and a lot is being said that is not accurate. Life has to go on. People need to work. Kids need to be educated. Wash hands and all that. My family drove across US, flew across US, and then flew to Europe. No covid in sight here. Did we spread it to others as non-syptomatic spreaders? I highly doubt it! Take precautions but don't cower. And please don't be so judgey all you Anonymous people out there!
Jason and Stacy, please disregard. I'd hate you to feel you can't speak out. You can. Ignore the haters and keep blogging. I love to see how you are doing.
sorry love your blog and your family but I have to agree with anonymous. I have at risk immediate family members (heart) and we must be diligent to keep safe. It's the same as the flu shot...a small inconvenience
to keep other people safe!
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Wow, some anonymous people get really savage. Just wanted to say very good post and that I agree with you, Jason and Stacy. Love that all the kids are doing well! God bless you
Hoping your kids are continuing to do well!
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